CLL Advocates New Zealand (New Zealand)
Scope of organisation
CLL-specific support group/organisation
Description
CLL Advocates NZ is a group of individuals affected by CLL and medical specialists active in the treatment of CLL, who want to:
- empower patients to advocate for and gain access to world-class treatments for CLL
- build public knowledge and understanding of the potential of modern CLL therapies to transform and save lives
- encourage the development of NZ guidelines to ensure equitable access to best practice treatment for all CLL patients, irrespective of geographic, ethnic or socio-economic differences
- promote and support NZ-based research on CLL, including the value and importance of developing and participating in clinical trials, and improving the quality of NZ data on CLL
- build awareness of accessibility and funding models in use in comparable countries, and
- form connections internationally with other CLL patient groups and advocates
Support services offered and available resources
Patient support services
- Buddy schemes (1:1 support)
- Directory of local / national support groups
- Local support groups
- Online group / chat or forum
- Patient meetings
- Telephone support / support helpline
- Welfare / financial support
Education services / Capacity building
- Conferences
- Educational events
- Publications and presentations at relevant blood cancer meetings
- Webinars
Digital Tools & Resources
- Apps
- Newsletter
- Podcasts
- Videos
- Website pages
CLL Information
- Clinical Trials directory
- CLL news and conference coverage
- Online leaflets & booklets
- Printed leaflets & booklets
Campaigning and Advocacy
- Advisory statements and position papers
- Awareness campaigns
- Health Technology Appraisals (HTA)
- Input in writing and/or in person to government and regulatory organizations
- Fundraising resources
- Personal Advocacy
- Petitions
- Surveys of the community served